2/29/12  Is Silence Golden or Bad News?

The facts are the facts, so I guess I just have to report them and let the rest fall where it falls.  After doing so well for a few months, I began to feel a few little problems in Mid-January.  I lost a little bit of spring in my step coming down stairs, I had trouble on the motorcycle riding down hills as I started creeping up on the tank by not holding myself back on the pegs, and perhaps most telling, I was starting to feel that presence I have in my left superficial temporal vein when the blood isn't flowing.  Knowing I had an appointment at Mayo in 2 weeks, I decided to wait and go to that to see if some of my fears were coming to fruition. 

On February 13th I headed to Phoenix and had an ultrasound done of my jugulars.  After being in the room with the tech who does the test for an hour, and then having the radiiologist come and try to find it, I knew things weren't going well.  The long and short of it was 100% occlusion of the left jugular yet again.  I then went to my appointment with Dr. Stone who, after reviewing the films, extended his hand to me and said as we shook, "Well we tried."  When I asked about further options, he advised he wasn't going to do the surgery again because in his opinion the risks outweighed the benefits.

I have no intention in this blog to be disrespectful to any doctor, especially those who had offered me help and hope, but in making that assessment, I don't think Dr. Stone really considered my future as an MS patient who is currently 46 and otherwise very healthy.  I'm as good a candidate for surgery as anyone, and I'll take a 3 or 4 month recovery over a slow decay any time.  So suffice it to say my trip to Phoenix wasn't so enjoyable.

The following two weeks saw my left leg continue to tingle as though I were sitting on a table with my feet off the ground, and I felt my balance continue to wane a bit.  I didn't lose much elsewhere over this period, but it was clear that I've slipped back some. 

I contacted Dr. Arata again to see what to do and after the scheduling process, I went to see him yesterday in hospital.  While on the table, he poked around my left jugular and found it was completed impenetrable from both the bottom and the top (as a side note, to access the top of the clot, the wire catheter went all the way from my groin up through the right jugular, around my head and down to the left jugular.  It looked like a big shepherd's crook).  That was the bad news.

Dr. Arata told me that native veins have small, hairlike pieces that hold the vein in position and help provide the blood and oxygen, but a graft like I had absolutely required the blood to be flowing from the top in order for it to survive.  He told me the graft had essentially died and shrivelled up inside my neck.  That was worse news.

There was some good news though.  He was worried that I might have lost the capability to have another vein reconstruction, but the procedure yesterday showed him I was a great candidate for a second surgery, given my overall health, age, condition of the jugular below the skull, and other factors.  While I was still groggy on the table he explained it to me and also called my wife, so as I drove home, we talked about it at length. 

One of the stated goals found in this blog is to rid myself of this disease.  I think I've actually already done that because I haven't had any MS attacks for quite some time, and while I cross my fingers that I won't have another, I do say this with some confidence.  So if the disease is out, the damage needs to be repaired, and this means there really isn't any option.  Surgery is what's needed to get the vein open again, and I have the benefit of learning that I will probably have to stay on an aticoagulant for a longer period of time, perhaps indefinitely, to help avoid the graft failing again. 

Dr. Arata's staff is working on getting things set up.  In the meantime, I sit here at my computer reporting once again, that CCSVI, while it has risks, is correlated to MS at least for me.  And anyone that wants to say this is a placebo effect would be incorrect. 

1 comment:

frenchie mom said...


I so appreciate your honest reporting. I am very sorry that your vein graft did not work out....Again, thank you for sharing. Many of us also have compromised jugular veins that need replacement. You are a brave pioneer. I am grateful to you....Have you been following the allogrfts being engineered by companies like cytograft? they apparently just won permission to offer their veins in germany. they grow them from your cells and make one for now and one for later and store the second one. Hope it comes to market in time to help you....and that it works of course!